Prophylactic MX and LE

Hildy910

I had a left-side UMX last year followed by chemo and rads, the latter of which eventually triggered mild LE. I am now contemplating having a right side mastectomy that will hopefully turn out to be prophylactic, and wanted to know about the risk of LE associated with such a surgery. I don't believe they will take out any nodes during the surgery, but am not positive.  If they don't, do I have to worry about LE, or blood pressure being taken on that side, etc? 

Also, what actions do you advise to minimize risk of a flare up on the already affected side?

Thanks!

Anna78

Hildy910,

With a prophelactic mastectomy they don't remove or dissect any lymph nodes therefore you should not be at increased risk for LE. You can have blood pressures on that side too. Hope this helps.

Hildy910

Thanks--that's what I thought, but read otherwise in some of my research, so I thought I'd ask the experts..

Marple

With a prophylactic mastectomy and no node removal one is still at risk for developing lymphedema.  It is likely less than with node removal but the risk still exists.

Hildy910

Aha!  I'm glad I asked you guys. Is it the disruption to your system and removal of all the breast tissue that causes the risk?  I will have to grill my BS on this when I see her on Wednesday, I just don't quite know what to ask...

Marple

Hildy, I'm not qualified to give the reasons so until someone with more knowledge weighs in I found this thread that you might find interesting.  http://community.breastcancer.org/forum/64/topic/795191?page=1#post_3261108 

LympheDIVAs

Hildy,

There is still likely a risk for lymphedema after prophylactic MX, but it is something you should discuss with your physician and therapist. Here is a link to a study where this issue is covered, but I'm not positive without reading it what the final suggestions are.

Hope this helps,

josh

Binney4

Hildy, hello!

There are several of us here with LE after a prophylactic mastectomy (myself included), with no nodes purposely removed. Many breast surgeons barely acknowledge the risk of LE after an ALND, much less after a prophylactic mastectomy. LE just isn't on their radar, and our medical schools are lax about training for it (there is no medical specialty responsible for the lymph system, so we're just sort of...out there!)

LE is possible in a number of circumstances that have nothing to do with cancer or node removal. For instance, any breast surgery, whether enhancement or reduction, can cause LE (though not as frequently as cancer treatment does). Also, football players are subject to LE from the constant trauma to their chests, as is anyone involved in an auto accident where they hit the steering wheel. Any crush injury can cause LE--after the earthquake in Haiti, when so many people had limbs crushed by falling buildings, LE was a huge problem. Knee replacement surgery can result in leg LE as well. So it's not as rare as we expect, but it goes undiagnosed in lots of cases, and for some reason all these assorted causes are not combined in anyone's thinking to result in a broader understanding of LE causation or even risk.

There are lots of theories about what happens to result in LE risk. Removing nodes, of course, is an instance of physically damaging the system, and so is radiation. But scar tissue can serve as a block to lymph flow too, depending on where it's located. Too vigorous stretching after surgery may prevent the severed lymphatics from repairing themselves in the brief window of time that is possible (so keeping your arm below shoulder level for the first 10-14 days following surgery may help them heal).  Surgical technique has not been studied enough, but there's some clinical evidence that the more tissue is "moved around" (for the sake of cosmesis, say), the more likely that LE may develop. There's also evidence in recent research from the UK that some of us have lymph systems that are already operating at full capacity and can be more easily overwhelmed than someone with a more robust lymph system. Unfortunately, there's no easy way to know before surgery which of those categories we fit into.

There's also the possibility of a genetic pre-disposition in the form of malformed or missing parts of the lymph system, which would influence how much risk any one individual would have from a simple mastectomy.

All that just to say, do what you need to in order to give yourself the best chance of never having to deal with the breast cancer beast again, and then make your own informed decisions about LE risk reduction strategies.

Do keep us posted! Be well,
Binney

Hildy910

Thank you so much, Binney! I always learn more here than any other place on the Interwebs.  I'm going in to see the BS today, and will certainly make LE part of the conversation. My concern is that if I do need some sort of node surgery, how to find out if she's a 'rooter' or not, but I can't think of any way to ask that question politely.